I’ve talked to several people who have gone from an active full time career/life to long term disability due to acoustic neuroma or other medical reasons. Through those discussions, I’ve noticed a consistent pattern. It is grief – and I’ll get to that in a minute.
Becoming fully disabled feels like giving up. It feels like failure. We accept too much responsibility and blame our “selves” for physical weakness and brokenness.
I am here to tell you that disability is not for the weak. Strength is required for acknowledgement of real limitations and to speak up for what we know we need. Perseverance is called upon to fight a tougher battle than “before.” It takes tenacity to continue to fight for goodness in life and a grateful attitude when we face long term adversity.
- Is not death. Disability frequently stirs a desire for ability, life, and not giving up.
- Is a process that doesn’t end often enough with a return to ability.
- Requires bouncing between pushing our bodies to function as fully as possible while documenting our physical limitations.
- Brings a new appreciation for life and relationships.
Living life with a disability brings a continuing cycle of grief. Everyone has a different timetable. The actual disability and grief are not cookie-cutter experiences but bond those who live it. Each stage takes varying lengths of time as it is repeated in various forms.
Triggers can quickly springboard us from progressing to stepping back into grief. Perhaps we inadvertently are reminded of something we used to love to do that is no longer possible. Other times we may get a glimpse, through memories, how relationships have been affected by changes in health.
I decided to “map” the well documented generic grief process to disability, and here’s my take:
Stage One: Denial and Isolation, or “this is not happening”
- “I just need a little more time, and I’ll beat this. Enough already – please.”
- “I’m embarrassed and really can’t face the world. How will I ever be in a social setting?”
- “If I just think good thoughts a little harder my body will heal.”
Stage Two: Anger, or “stomping my foot”
- “This is not fair! I don’t deserve this. Stupid (fill in the blank)”
- “I’m not comfortable with vulnerability. I do not want to ask anyone for help!”
- “The world is continuing without me in my prior role. I wasn’t indispensable. Really?”
Stage Three: Bargaining, or as I affectionately call it – “If Only” stage
- “If only I ate better, my body would recover.”
- “If only there was something I could do to make this go away.”
- “It must be my fault, and I will be stronger from now on.”
- “The medical world can cure anything, can’t they? Isn’t it a science that understands everything about our bodies? If only I could find a doctor who understood my case.”
Stage Four: Depression, or “I’ll just be under this rock over here if you need me, but I’m guessing you won’t”
- “I’m exhausted. I’ve tried everything. It’s a lost cause. Why even try to be happy?”
- “Why continue to look for answers in the medical community to mitigate pain, tinnitus, or limitations.”
Stage Five: Acceptance, or “inhale, exhale”
- “Life sucks but I have things to do. I’ll manage my disability so that I am still aware of the joys of life.”
- “I love life and will squeeze every bit out of it that I can. I will pay to play.”
As time goes on, we appreciate being in the acceptance phase and learn to recognize it. We’ve learned not to just cope by treading water but have adapted to living life beyond breathing. We will have triggers that pull us back into earlier stages of the grieving process but learn to claw back to acceptance again — as quickly as we can
Disability is not giving up but the beginning of a new journey.
You got it!. I could see me in most of those steps. I think I am at 5 – most days 🙂
This speaks to me Sally….Thanks.
Beautifully said, it is a process and often people get stuck – nice to be reminded you can choose not to stay there.